The Tatton Brown Rahman Syndrome (TBRS) and DNMT3A Patient Registry has undergone a major transformation, bringing new features that will enhance its impact and accessibility. This registry is more than just a data collection system—it is an interactive, participant-driven resource designed to empower individuals affected by TBRS, Heyn Sproul Jackson Syndrome (HESJAS), and DNMT3A-related disorders. Some of the key updates include the use of standardized surveys to improve data quality and the addition of Heyn Sproul Jackson Syndrome to expand the registry’s scope. We also have new translations in progress to ensure accessibility for participants worldwide. With these improvements, we are creating a more inclusive and comprehensive resource that will better serve the community and researchers alike.
By participating in the Patient Registry, individuals and families contribute directly to the advancement of research, helping scientists and clinicians uncover critical insights into DNMT3A-related conditions. The data collected can support the development of new diagnostic tools, guide treatment options, and improve clinical care for those affected. Every participant strengthens our understanding of these conditions, helping researchers identify patterns, potential therapeutic targets, and long-term health outcomes. Simply put, the registry gives a voice to those with TBRS, HESJAS, and DNMT3A variants, ensuring that patient experiences drive scientific discovery.
We are excited to announce that the updated DNMT3A and TBRS Patient Registry has arrived! This milestone would not be possible without the dedication of our volunteers and the TBRS Community members who have helped guide the migration to this improved platform. Your participation and support are key to making this registry as impactful as possible. Together, we can drive progress, improve care, and bring hope to those affected by TBRS, HESJAS, and DNMT3A-related disorders.
Get Involved!
New Participants: Click here to participate in the patient registry.
Former Participants: Look out for an email from [email protected] to migrate your old account to the new platform!
